You are more than someone with SMA. Who are you?
SMA is an all-consuming condition and affects so much of our lives. Other than SMA, how do you describe yourself? What is your passion? How have you adapted living with SMA so you can be who you are?
SMA is a big part of my life, but it’s not the whole story. I describe myself as a writer, artist, and mental health advocate (in training) who’s passionate about storytelling and creativity. Writing has always been my way of expressing myself and connecting with others, whether it’s through personal reflections, fanfiction, or crafting scenes that explore emotional depth just for fun when I’m bored.
Living with SMA has taught me how to adapt in ways that help me pursue what I love. For example, I use assistive technology for drawing to work around hand weakness, and I approach challenges with a mix of creativity and patience. I’ve also learned to lean into collaboration—asking for help when I need it and finding ways to make things work as a team. SMA shapes parts of my life, but it doesn’t define all of who I am. My passions and creativity always come first. -Jennifer SpinalMuscularAtrophy.net Moderator
I’m a software engineer by day and a web-tinkering, side project enthusiast by night. I’m interested in writing, design, and typography. I’m a big fan of quirky personal webpages and I've had my personal website, blakewatson dot com, for 20 years this coming August! I also enjoy teaching people how to make websites and I write tutorials to that effect. I write a good bit about assistive technology and many of the digital tools I have made are just assistive technologies that I made for myself.
I enjoy creative writing as a hobby. I started participating in National Novel Writing Month in 2010 and have kept doing it almost every year. A lot of my projects die after a few chapters, but so far I've written 3 novels, 2 novellas, and a few short stories. I don't publish anything, but I make my brother read everything and sometimes share with friends.
I would describe myself as an introverted nerd that forces himself to be outgoing sometimes 😅, enjoys small group activities, and is generally interested in anything creative.
, fellow introvert here (INFJ). It sounds like you have a lot of interesting things going on. Writing for yourself is worthwhile - I write poetry and have only had something published in college. I haven;t sought anything since. What genre do you write? Thanks for sharing! - Warmly, Donna (Team Member)
I'm an accountant by day and a cozy gamer by night. I livestream at least three times a week. I've been an accountant since I was 15 and by 18 my brother, dad, and I started our accounting firm. I don't live in that country anymore (Jamaica), so after I got married I moved to MA and that's when I started advocating in the area I was in.
After my divorce was very lonely, because of our religious beliefs, I shouldn't have left but I was certainly suffering silently so no one knew how long or how bad it got. So I moved to south florida surrounded by my high school friends. That is when everyone kept telling me to write, so I dabble in that as I review novels.
I'm currently a CureSMA Streaming Ambassador. Every August my Youtube channel runs a month long Charity stream, as I build my community. I've tried to include people with SMA, so far no takers. We accept everyone and rarely do we discuss what is going bad, only happy vibes. I'm living proof that SMA is just a thing that I choose not to worry about and my wheelchair is my legs, when it's broken you've chopped of my legs, how would they feel wait 2 months for someone to fix it., you're doing so many amazing, exciting things! I'm glad that you got yourself in a better place. It is hard to end a relationship, but when it brings such deep unhappiness. Sometimes it is necessary to come into your own.
I'm an amputee, so I feel you. When my prosthetic is misaligned, or too big, it causes great pain and greatly limits my mobility - even a little scratch that would be no big shakes anywhere else on my body can be excruciating within my socket. What got us here means so much less than our spirit in being us every day. - Warmly, Donna (Team Member)
